Quite a bit of time has passed since I was last here. I regret the lapse, I think about this blog a lot. I do tend to worry that the same things keep coming up like a bad soap opera and maybe it gets old. Or maybe it’s hard for me to look at my life in the cold black and white of the page.
Things have been happening.
After I posted my blog about not calling 911, I let my resolve wash away in the loving concern of friends. One night two months and a bit ago, the pain was back—but with it came an odd pressure that I hadn’t really experienced before. It felt like a wooly mammoth had taken up residence on my chest. I called for the EMTs and was taken to a brand new hospital, although it was in the same health system. I hoped that a new ER would me new people and better treatment.
Yeah, hope doesn’t seem to last long for me.
The staff was cold. I was left NPO in a room with the door and curtain closed and the nurse call button nowhere to be found. For all I knew there wasn’t even one in the cavernous room I had been put in. The nursing staff was cold. They took blood samples and disappeared. After about thirty minutes an alarm started blaring and I turned around to look at the monitor attached to me. It didn’t look good and there was a big red bar flashing across the top.
Did staff come racing into the room? No. They turned it off at the nurses’ station, and when it happened again, they did the same thing. No one came to say “there is nothing to worry about” or “those things are sensitive”. No, they left me alone in a room, in pain, starting the cycle of panic left over from the even with my feeding tube (see Friday Night I Screamed). In fact the whole thing was starting to feel like that horrific night again. When the doctor came in to talk to me, I was trying to stay calm, but the PTSD was really starting to grab me and so, in desperation, I handed my phone to the doctor and said the person I was speaking to could answer on my behalf. I have never done that, but I knew there was no way anyone there was going to listen to me. I wasn’t even really listening to what was being said, I was focused on trying to stay calm—right up until I heard the near-scream from my phone. I snapped back into the room and discovered they were about to give me an antianxiety and an anti-nausea drug that I am severely allergic too. They got that straightened out, but that was it. I asked for water, ice something, because they had not hung a bag a fluids, which until that night in August was standard procedure in the ER. So I was left for hours, the thirst getting worse and no one offering to help.
At three the doctor wandered in to tell me I hadn’t had a heart attack. I was a little unsure. I asked what was going on and was told it is not their job to diagnose me. (Direct quote) When the nurse appeared half an hour later with discharge papers she said I could (again quote) “go home and deal with this with your own drugs.” They escorted me out of the ER, saying they had called a cab. Two hours later, still in pain, the anxiety coming back, I gave up on the ER’s supposed help and called a friend.
I learned an important lesson that day, and in the following days when I spoke with the grievance and risk management person at that hospital (same person, seems a little conflict of interest). It’s a lesson I will remember, I don’t need another bout of trying to trust. I am through this time. No more ERs unless I am dragged in with the werecreature still eating my leg or something.
After that, I went back to my life. Trying to do the best I can. About a month and a half ago I started to “flare” which is gastroparesis for “I am throwing up everything I put in my body.” It got steadily worse, until three weeks ago, when I spent several days pretty much IN the bathroom, not daring to move. I had stopped eating and was living on sport’s drinks and pedialyte. It is slowly running it’s course, the vomiting is down to mostly at night. Which is an improvement.
The funny thing is I am gaining weight, no one can explain how—including the month while I had pneumonia and gained nine pounds and I literally DID NOT EAT ONE BITE of food. It’s explained away as “the disease” or the “starvation mode” thing. (Although I bet almost anyone reading this—if you didn’t eat for a month, just drank mostly water, you would lose a lot of weight.) I am only telling you this because it impacts part of this story.
Things took an abrupt and sudden turn when I saw my doctor several weeks ago—one was a referral to a knee surgeon who many people had told me was an honorable men, and the other was my routine mammogram.
When I got the letter from my doctor about the mammogram, I almost tossed it without reading it. It has always come back the same. There might be something there, it’s not clear, see you in a year. Only when I opened it, the letter didn’t say that. It said “schedule and appointment immediately for 3D diagnostic imaging.” I read it twice and it said the same thing both times. I made the appointment, thinking it was just one of those things, nothing to worry about.
Imagine my surprise when they were done imaging and the doctor came in to talk to me. I was busy trying to make heads or tails of Frankenstein-worthy medical equipment and I was listening to herbtalk about the images. It seemed routine, right up until I heard the word biopsy. My mouth went dry. The doctor kindly shook my hand and left me with the caring and wonderful tech that had done my scans. She explained the Frankenstein equipment. She went through the whole procedure and I asked what days she worked. We had established a relationship of medical trust and I need that to face big things. She is working Tuesday, so Tuesday I go to have a biopsy.
The very next day, I had the appointment with Dr. Honorable Gentleman. The man I was told didn’t listen to what companies said, but always did what was right. I respect that, I like facts. I like that what is best for the patient comes first. I left the home for the appointment with a warm glow. I was seeing the right man for my poor battered knee and I would be able to walk again soon. His staff was a little brusque, but again, he was Dr. Honorable Gentleman, so things would be okay. It was a new Day.
When he came in he sat down. He brought his laptop in and showed me the MRI taken of my knee last year (See The Day). He explained about my kneecap, he showed me the things wrong with it. He pointed to the various colors and let me ask questions. It felt like a dialog. He said essentially my kneecap is toast, the rest of the knee needs repair but the patella is the most immediate problem. Okay, judging by the scans and the information he had just given me, fixing that would make it easier to live. Maybe I would be able to take my camera and walk on the beach again.
You’d think I would have learned not to be hurt, surprised or battered by medicine. I am not sure it’s something you can achieve. Medicine touches on the whole body and mind and any attack there will cause a reaction. I am still reeling from the one that was delivered that day.
Yes, there is something very wrong with my knee. No, we aren't going to fix it. No replacements until you are 55. We will give you a shot that has a fifty percent chance of helping and if you really want to walk on the beach we can give you a cortisone shot on a case by case basis.
No words. I couldn’t even get them out. I still don’t know if it is rage or resignation his treatment brought to life in me. I am devastated. I am working so hard to make my life livable and to top everything off he tells me (can you guess?) I need to lose weight. I told him I eat about 500 calories a day. I don’t know why I have gained weight this last year. I don’t want it and of course I know it would help my knee if I weighed less. You know what else would help my knee??? FIXING IT.
So I left Dr. Honorable Gentleman’s office with my head down and my shoulders hunched against the blows. I didn’t even realize I had done that until I got to the car and was aware of my posture. I made it home. I made it in the house. I made it into the office and I broke. Even as I write this tears of desperation are leaking over my face.
I don’t know what to do. I know I will pick myself up and go on. I always do.
I have a biopsy on Tuesday. At least I know the medical staff there is caring. It’s sad when you look with less trepidation at something like that than visiting a surgeon. There are two things about that biopsy, one the staff is gentle and kind and restored some of my faith (robbed the next day by Dr. Honorable Gentleman) in medicine. And if the biopsy shows something, it is a SOMETHING to fight. Not a phantom illness that flares and aches, not a destroyed leg that sadly belongs to the wrong age human. It would be something concrete and maybe in working with that I would find some healing in myself.
This past week made a huge wound in my life and I have no idea, right now, how to stitch it closed. I think I have a handle on it, the day is calm and good and out of the blue it all hits me again.
I am tired of fighting phantoms; I am tired of fighting the medical profession. I feel like a soldier in the trenches of Verdun. There is nothing but the endless stretch of lifeless, stinking mud and you can hide from that, but once you see it, it’s there. Forever.
I don’t know where to go from here. I guess the first step is Tuesday.
From there? I don’t know.
Multum in Parvo means much in little and it describes life so well. I have gastroparesis, esophageal spasm and other issues that offer challenges to my daily life. This is the blog of those days.